Princess Yasmin Aga Khan poses for a photograph at the Aga Khan Museum in Toronto, Ont. on March 29, 2019.

Cole Burston/The Globe and Mail

When Hollywood star Rita Hayworth was diagnosed with Alzheimer’s disease in 1981 at the age of 62, her daughter Princess Yasmin Aga Khan took on the role of her conservator.

In addition to caring for her mother, Princess Yasmin, who is a half-sister of the Ismaili Muslim spiritual leader, the Aga Khan, also became an early spokesperson for those with Alzheimer’s, bringing public attention to a neurodegenerative disease that few openly discussed.

On Friday, she was in Toronto to participate in a film screening and panel discussion at the Aga Khan Museum on the benefits of the arts for individuals living with dementia.

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Princess Yasmin, who is president of Alzheimer’s Disease International, a federation of Alzheimer’s associations worldwide, spoke with The Globe and Mail about how the disease affected her family.

What was it like when your mother began showing signs of Alzheimer’s?

She started with symptoms in her early 50s. There was a lot of confusion, disorientation, mood changes, and she became quite aggressive. She’d hear voices outside the house and call the police. The police would come and there was nobody there.

She had also been drinking – not heavily, but the alcohol exacerbated the plaques and tangles in the brain that were being created with the disease. I thought she had this serious drinking problem, but there was this element of brain disease.

She was forgetful, accusatory. It was confusing and difficult, and it wasn’t until she actually had a collapse that I could get her to a doctor.

What was it like to diagnose Alzheimer’s then?

She had a brain scan and she had memory testing by a neurologist. And between the brain scan and the memory testing – like “who’s the president of the United States?" – they actually diagnosed her then, which is quite unbelievable. It was confirmed on autopsy when she passed, where you could see the plaques and tangles. But what we could see in the scan back then in ’81 was shrinkage of the brain.

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Alzheimer’s wasn’t widely talked about at the time. What prompted you to open up about it?

The Alzheimer’s Association in the United States, founded by Jerome Stone, they found me because they had heard rumours that my mom was diagnosed.

Jerry said, “We’re a small family group, and we would like to know if you’d like to join us and to spread the word about this disease.”

I said, “Absolutely.”

I was the caregiver, but they were my caregivers. They were there to support me and to help guide me on what to do and what to expect. It was a very small organization at the time; now it’s a national and international organization. Then, the press came to me. I talked about it and kept talking about it.

A lot of people are still reluctant to talk about dementia.

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That’s our biggest problem, and I’m not sure why. There are famous people not coming forward, not talking about it. Maybe it has to do with their careers. Embarrassment? I don’t know.

How did art help your mother?

She actually painted. I think she started painting in the early stages of her disease. She loved it. It brought her peace and she had some talent. She also used to love to play the castanets.

There weren’t medications at the time. Today we do have medications, which can help slow it down for some people, and also help the mood. I think that’s where painting comes in and music comes in, with mood, to help relieve the stress.

Did you find an outlet too?

I coped because I had the Alzheimer’s Association. I was very fortunate, which many people aren’t, to have 24/7 nursing care. They really helped me and saved me. My friends and family were also there for emotional support. But it was a difficult road.

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When I went to university, I was a music major. Timpani was my specialty, and voice. I was going to go to Europe to study, and that’s when my mother’s disease heightened, and it was really necessary that I step in. Then I said, okay, this is more important than my career in music. And that was the right decision. I don’t have any regrets.

What message do you want to share with others?

That there’s hope. There’s education on the disease. That one can change the mood by introducing art. It’s not a cure. It’s a momentary time of pleasure.

This interview has been condensed and edited.

Editor’s note: (April 2, 2019) An earlier version of this article incorrectly said Princess Yasmin Aga Khan was the Aga Khan’s step-sister. In fact, she is his half-sister.

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